5606726 IMPACT OF ALLOGENEIC STEM CELL TRANSPLANTATION ON PHYSICAL, MENTAL, AND SOCIAL HEALTH OF ADULT SICKLE CELL DISEASE PATIENTS: A MIXED-METHODS STUDY
Authors: E. Dovern, S.J.A. Nijland, M.M. van Muilekom, E.M.J. Suijk, G.M. Hoogendoorn, H. Mekelenkamp, B.J. Biemond, L. Haverman, E. Nur
Journal: HemaSphere (2023)

Background: Sickle cell disease (SCD) is characterized by chronic hemolytic anemia and recurrent painful vaso-occlusive crises, resulting in considerable physical and psychosocial disease burden and early mortality. In recent years, the application of allogeneic hematopoietic stem cell transplantation (HSCT) as a curative treatment for adult SCD patients has increased. As a result, a deeper understanding of the complex relationship between physical, mental, and social health before and after curation is needed. Aim: To explore the experiences and perspectives of adult SCD patients on the impact of HSCT on their physical, mental, and social health. Methods: A mixed methods study design, consisting of a semi-structured interview and completion of 9 Patient Reported Outcomes Measurement Information System (PROMIS®) item banks per participant was used. Adult SCD patients who underwent HSCT ≥ 1 year ago at the Amsterdam University Medical Center were eligible to take part in this study. Interviews were recorded, transcribed verbatim, and thematically analyzed using MAXQDA® software. Standardized T-scores of PROMIS® measures were evaluated and compared to reference scores of the Dutch general population. Results: Ten SCD patients with a median age of 29,5 years (range 19-49) were included in the study and interviewed between October 2021 and May 2022. Median time since HSCT was 2.7 years (range 1 - 3.5). All patients had successful engraftment. Relevant themes were (1) pain/living pain free, (2) physical wellbeing, (3) mental wellbeing, (4) perspective/outlook, (5) education and work, (6) family and friends and (7) activities and participation. Living pain free and the emergence of a future perspective were major improvements for most participants which resonated strongly in their daily lives. Nevertheless, emotional struggles with processing the impact of having had SCD on the one hand, while adjusting to the novel circumstances on the other hand, were common among participants. Before and after HSCT, participants experienced a lack of psychological help. Two patients with ongoing pain from avascular bone necrosis had mixed feelings about the success of the transplant. These two patients scored within the mild, moderate, or severe symptom category on ≥ 7 of 9 PROMIS® item banks. While mean PROMIS® T-scores of all participants fell within the reference values of the general population (Figure 1), a large variation between patients was observed which matched with our findings from the qualitative data. Conclusions: Adult SCD patients experience significant improvements in many aspects of their physical, mental, and social health after cure by HSCT. Yet, they are confronted with a new and often unfamiliar reality, which carries different challenges. Pain as a result of irreversible complications of SCD continues to have a negative impact on quality of life after HSCT. Clinicians should acknowledge these challenges and aim at creating realistic expectations in future transplant candidates. Moreover, patients expressed a need for tailored psychological care, which should be offered before and after HSCT.References 1. Badawy et al, Blood advances 2020; 5:2. 2. Gallo et al, West J Nurs Res 2019; 41:4. 3. Krishnamurti et al, Am J Hematol 2019; 94:4.